I had posted a week or so ago about what other options I had when biologics have failed. Today, I had my appointment with my RD and I brought up the suggestions, that those here gave, of antibiotic treatment. Since I have to change my DayPro (to Lodine), I have to wait a few days but in about a week or so I should be on minocycline. I have read it is for early RA patients, (I am SO not!) but might as well give it a shot. I have to clearly try EVERYTHING before diving into the world of Rituxin. Not that antibiotic treatment doesn't have its negatives, but they scare me less :)
Shandi
Hopefully the antibiotic treatment works for you! Did the drs try you on methotrexate at all? Sorry that the biologics didnt work for you. Hope you get to feeling better.
Hope this will be the treatment you've been searching for. Good Luck!Hi Shandi,km - I am on MTX off and on. My tolerance level with pills is about 5mg. The body revolts if it goes much higher. One doctor pushed bounds and was at 20 mg and my mouth got so sore that I could not eat! And I was taking obscene amounts of folic acid. Could have done injections but the doctor required trips to the office for them. Considering I have a diabetic child at home, a registered vet tech, I THINK I can fill a syringe!
Gimpy - I do not know what dose I will be on as I did not receive a script for it today. Since I have to change DayPro (horrible rectal bleeding) we are waiting to see how I do with Lodine before confusing matters. I haven't had great success with side effects with NSAIDS either. After a few days on the Lodine I will call him with my progress report and then he will call in the minocycline. His comment was it has great success in England. Don't know quite what that means in his regard of the treatment but at least he was willing to listen. I told him given my breathing reactions with infusions, I want to try everything else else possible before Rituxin.
I love my RD :)
They were going to have you go to the drs office to do mtx shots? Thats crazy! It's sooo easy to fill the shots. Drs are jacked up sometimes lolOh good gracious. Talk about wanting to make money to either a) put their kids thru college; b) buy wifey pooh new home or car; or c) pay off student loans.
OMG you can so do mtx at home. They show you the first time and then after that you are on your own.
Shandi,
If possible, try to get the Brand Minocin instead of the generic Minocycline- there is less stomach irritation with it and is pelleted so it's time released.
Also, try to get them to write the scrip for 200 mgs (100 mg pill 2 X) a day to save on co-pays. It will come in handy and give you a stockpile in case your insurance company gives you grief later.
Good luck - AP worked wonders on me!
Pip
Liz, i didnt even have anyone show me. The dr is like you know how to do your humira shots? yea well you'll be fine LOL Plus i think i asked you a bunch of questions about it tooOh I do hope it works for you! Why not! Whatever works, works,
sarah
I think you have made a very good choice! AP is working for me, but it is not a quick thing - sometimes it is 2 steps forward, 1 step back, but it is still a lot safer than many of the RA drugs. Just be sure to take it slow at the beginning. A lot of docs prescribe 200mg a day because that was the dosage used in the studies, but some people just cannot tolerate that much. They herx so badly that they give up, when, in fact, a certain amout of herxing is a good thing (means AP is working). For a lot of info, advice and support, especially on "tweaking" the protocol just for you, check out www.roadback.org and www.rheumaticsupport.net. And keep us posted here, others may be interested for future reference. Good Luck! PatShandi,Shandi - I live in England and its news to me that the AP treatment is so good here. So many meds have failed me and i had never even heard about the AP treatment until i posted on here.I will ask my rheumy when i see him in May.
Take care
I just started Rituxan. No side effects, just a really long infusion time.JustGotIt -
The minocycline will work just as well. I was diagnosed 'early onset severe' in March 06' and was on a walker at night by July - so I wanted the 'big guns'. It turns out that the brand is better if you have GERD or stomach issues, which I do. If you have some stomach issues you can fight your insurance company (which I intend to do when I get settled). If you do not and you want the brand you can order from some of the reputable companies in Canada (I'm doing that today so I don't run out). I'm going to use buylowdrugs.
As for the probiotics - I think that is more important than most people realize. A lot of research says 70% of AI diseases start in the gut and I had tried the gluten free diet and it didn't really work for me so I stopped there. I should have tried the yeast anti-inflammatory diet. Because I have been on the road and 'home-less' and eating a lot of junk food and I stopped taking my probiotics and have started feeling 'yucky'. Not pain. Just tired and achy. Reading your post made me realize that I also have a 'yeast infection' and need to get back on my probiotics. Think about it - one month and I can feel the difference. I thought it was because of the stress.
Go to Whole Foods or some of the vitamin shops - pick up the probiotics they have in the refrigerated section (thank God my hotel room has a fridge). I used Solaray, I think. It takes a while to work up to 4 times the RDA - but I did and felt fantastic.
Aother thing - when I was reading the RB and trying to figure out patterns - one of the patterns I noticed is that AP would work well for most people - they'd get past the herx thing in the beginning and be doing fine - until around month 18. I cannot tell you how many posts I've seen that said it was working and then stopped. Almost all of those people reported that they had not taken probiotics. What I think is we all have 'gut issues' and your body can only kill off so much with a little dose of Minocin - and Mino kills the good and the bad and you need good gut flora. So - you kill off the good gut flora and the bad keeps going (it can live in acidic conditions better) and then you've just undone all the hard work you did killing off the microbes. So...for me...I decided to just take the probiotics to be on the 'safe side'. Then I moved and forgot. And got a good lesson - no?
Pip
Pip, I will get probiotic this week end. I didn't consume milk and dairy products much before.But since the diagnosis, started drinking milk everyday, eating eggs twice a week. I know they are common allergens so people with RA should avoid.But I am just 31 years old, I think I need calcium. I don't like fried foods/junk food. so I never eat those.Never liked salad before.but now trying to eat.Before treatment I had few(not sharp) pains in multiple joints. It's been 1 month I am on minocycline but my pain hasn't reduced. Sometimes I feel it's increased a bit. How long should I wait till it stops completely? It does stop completely right?
I mix my probiotics up so that I'm always taking different varieties, and therefore different mixes of good intestinal flora. It seems to be working. I got one killer yeast infection on my 4th week, but since I seriously cut down my sugar intake I haven't had a recurrence. I do the simple home candida test about 4 times a week just to make sure I'm still on top of it.
Maybe I'm just getting information overload. I'm a vegetarian. I gave up dairy a couple of weeks ago, partly because I would prefer to consume no animal products, but MOSTLY because I've read and heard that giving up dairy products is beneficial to RA sufferers. NOW there is all this talk about these probiotics helping, so I'm just really confused.
To dairy, or not to dairy?
Probiotics are only important if you're on AP therapy, so worry no more
and keep going in your vegan direction (unless you're on AP---even then
you can just take supplements and still avoid dairy).
While I'm posting again, I'd also like to point out that those taking
minocycline should not take it within two hours of anything containing
calcium because the antibiotic will bind to the calciun, rendering it
ineffective. Actually, this is true of most medications.
Gimpy-a-gogo- what kind of test you do at home to test yeast infection?
Try this simple test to see if you have Candida. First thing in the morning, before
you put ANYTHING in your mouth, get a clear glass, fill it with water and work up a
bit of saliva, then spit it into the glass of water. Check the water every 15 minutes
or so for up to one hour. If you have a Candida yeast infection, you will see strings
(like legs) traveling down into the water from the saliva floating on the top, or
"cloudy" saliva will sink to the bottom of the glass, or cloudy specks will seem
to be suspended in the water. If there are no strings and the saliva is still floating
after at least one hour, you are probably Candida yeast free. Most people fail the
saliva test. I have heard that over 80% of the population has Candida yeast overgrowth.
Wow, that was gross!
Thanks for the info, Gimpy...I'm gonna try to stay on the vegan trail. It's not easy, but I feel good about it. Right now, I just miss pizza.
JustGotIt - Yes, the pain stops completely. I was lucky in that I hit the AP lotto - minor herxing and I showed massive improvement within a month. Most people do not have it as easy as I did - when I was lookig for patterns I noticed that most people said they 'turned the corner' around month six and just got better and better. That's why I didn't understand not trying AP first - there was a post here that somebody's doc said MTX can take up to 6 months. If most things take 3 - 4 months why not start with the least in side effects and hang on 2 more months? That being said - it is not unusual to feel bad - or even worse - in the very beginning. Right around the 3 month mark most people report a massive herx. Mine hit at week 14 I think - my right hand blew up and looked like Felix the Cat's white glove. I kid you not! It didn't hurt but it was ugly as all get out. :-) Anyway - that feeling slightly worse you report means that you are herxing and that you are killing microbes (to my way of thinking :-). You are now on the road back to health!
GoGo - I have a scrip for diflucan - and it's not touching this. I've noticed that people post on taking nystatin and things of that nature and working their way up to multiples a week. I think I may need something like that. If yeast is the reason I got sick (breached intestinal walls) and stress let the cat out of the bag - then I need to kill all the yeast with diet and meds for a good 6 months or longer until I am sure that the wall is repaired. Does that make sense? I, too, don't want too much pressure on the liver - but they say if you take it slow it works out. Of course, I need to get settled first. Still no apartment. The last one tried another 'bait and switch' and we walked out - with me angry! So far nothing worth living in has popped up and we're getting worried. We keep moving from one friend's to another and then we move again. My friends all live in the foothills so I can't guarantee connectivity. Sigh.
Redheadtheresa - there is soooo much contradictory info on diet that I've come to the conclusion that your body type has something to do with it - but I just don't know what. LOL I think diet is a lot more important than people realize and the only way to figure out what your triggers are is by an elimination diet - and that takes time and energy. If we want to heal then we have to do these things - figure out what our bodies need and how to help it heal. I can't prove this - but I think removing whole food groups make us more susceptible to allergies and sensitivities. Maybe if we remove something and slowly add it back in when we are more healed...all I know is that when I get an apartment I'm going to be experimenting with my diet because I now know there is something to this...just have to figure out what it means to me. LOL. Heck, at least these elimination diets are cheap!
Pip
[QUOTE=Lynn49]I just started Rituxan recently and it seems to be working. No side effects, just a really long infusion time.
Lynn[/QUOTE]
I thought you said on another board you just started Rituxan today, Lynn?
Cathy...you must do your mtx sub-q. For some reason when I switched they have me doing it IM so I had to be shown how to do that. Even tho I already knew from being a paramedic lol. I wonder if there is some law somewhere that says the docs have to make sure you can self inject without killing yourself lol.
For those wondering....mtx can be done sub-q or IM. Either way the med is absorbed by the body.
Oh Shandi,Oh for the love of pete! I really don't see the point of your post or how it's bringing anything positive karin1013. What is the difference if someone wrote today or recently? Recently could very well be today...it's just a matter of how one words things. Sometimes even when things are straight in my head I have a hard time putting it in writing. Unless I'm missing something, it seems Lynn edited her post to clarify as you felt it necessary to "call her out". For the life of me I don't understand why you would feel the need to call someone out on their post or save their original. I found that post infantile and unnecessary. I'm not here to get into a pissing match with anyone however, I am tired of coming accross these negative, spiteful posts. We all have enough to deal with without adding stress from the place we come to for help and support.
Moving right along......
Shandi...I don't see a recent post from you. How are you? Would love to hear from you and know how your doing and if your treatment is helping you. I was on oral MTX for 2 years and did not tolerate it well at all. It made me vomit and very lethargic. My RD also offered injectable stating I might experience less side effects but told me I would have to go into the office for the injections which just wasn't an option. I just assumed you couldn't do them at home for legal reasons. After reading some of the posts here I will certainly be bringing it up at my appoinment tomorrow. If I can do them at home, it's certainly with a try. Are they affordable? I only ask because the Enbrel injections are insane even with a co-pay.
Peace & Love...Neasy
Hmmm...at first I was like maybe there are legal reasons after reading Neasy's post about having to go into the office for mtx injections. Then I'm thinking...diabetics self inject and it is diabetic syringes that are used for mtx injections! And then there are ya know the biologics that we inject. But legal reasons was something I didn't think of. This is why this board is so dang important! If one of us doesn't think about something from a certain angle, someone will. So, no more fighting!!! WE NEED EACH OTHER to get thru all of this.
Neasy...what are you going to say to Dr. DingDong about self injecting the mtx and not coming to the office every week for it? I hope you can talk him into letting you do it at home. Mtx in injectable form is relatively inexpensive. It is not covered by my insurance and I pay .00 a month for a months supply of the vials. I just went to the rheumy and he confirmed that the mtx that I used to get with the preservatives is in a shortage and not available right now. So, I get the vials that you have to throw away after one use. Because of no preservatives in it, there is a chance of the mtx going bad if you use it again after one use. Bleargh...I love throwing away my money!! NOT!! A box of 100 syringes are .00 at the Walgreens I go to.
I wonder if the doctors that say you have to come to the office weekly are either hungry for that co-pay (there shouldn't be on it should be a nurse visit which is free) or don't trust us to inject ourselves and it is really pretty easy to do.
grammaskittles....I'm going to ask Dr. Ding Dong if the MTX injections can be done at home and if not, why? You brought up a good point about the office visit. If he tells me that they have to be done in office I will also ask him if there is an office visit fee and if there is why? I'm tired of being Ms. Nice Patient that just lets him skidaddle off without answering my questions and giving me the time I deserve in my appointments. I will post what I find out after the appointment tomorrow. If there is a legal issue....perhaps it's because methotrexate is a chemo drug and is regulated differently than other drugs. I will have an answer for us tomorrow!
Peace & Love...Neasy
[QUOTE=Neasy]Oh for the love of pete! I really don't see the point of your post or how it's bringing anything positive karin1013. What is the difference if someone wrote today or recently? Recently could very well be today...it's just a matter of how one words things. Sometimes even when things are straight in my head I have a hard time putting it in writing. Unless I'm missing something, it seems Lynn edited her post to clarify as you felt it necessary to "call her out". For the life of me I don't understand why you would feel the need to call someone out on their post or save their original. I found that post infantile and unnecessary. I'm not here to get into a pissing match with anyone however, I am tired of coming accross these negative, spiteful posts. We all have enough to deal with without adding stress from the place we come to for help and support.
Moving right along......
Shandi...I don't see a recent post from you. How are you? Would love to hear from you and know how your doing and if your treatment is helping you. I was on oral MTX for 2 years and did not tolerate it well at all. It made me vomit and very lethargic. My RD also offered injectable stating I might experience less side effects but told me I would have to go into the office for the injections which just wasn't an option. I just assumed you couldn't do them at home for legal reasons. After reading some of the posts here I will certainly be bringing it up at my appoinment tomorrow. If I can do them at home, it's certainly with a try. Are they affordable? I only ask because the Enbrel injections are insane even with a co-pay.
Peace & Love...Neasy
[/QUOTE]
Neasy:
Someone e-mailed me and asked me to bring it to the top so they could see.
I just think it is important that we are all honest about the medications we are taking. She posted on April 25th that she was on a medication and had had no side effects. She wasn't even on the medication, yet. If we are really trying to help people through our experiences, don't you think it is important that we be honest?
I am super positive and hopeful about this disease and life in general! It is just these naysayers and dishonesty that gets me down sometimes. I'll try not to let it.
I save all my files. That way I have them to refer to for research purposes.
Take care, Karin
Neasy and Clarky -
When I first came to a BB I was warned by a friend that because of the anonymous nature of the Internet many people pretend to be 'sick' or have problems that they don't really because of some odd reasons -> most notably their own mental, spiritual, drug etc. issues. I didn't think she could possibly be right. Why would people bother with stuff like that? Don't they have a life? Since her warning I've come across people on other boards that I just don't 'trust' because of changing stories, changing meds...whatever.
I don't know if it was a mistake or what...but if somebody recognizes somebody from another board and questions something said - I'd like to know. There do seem to be people on THIS board that are straight up and trustworthy - but a few that make me question their "integrity". Maybe I'm wrong, and I would never name names (heck, can't remember names LOL) but if they're argumentative just to be argumentative - well, we who feel powerless tend to take our power where ever we can find it - and with these people it's high school all over again with attacks made to make the attacker look 'good'. The powerless never seem to realize how 'sad' they look to others, tho.
Anyway - on to the subject at hand.
Midge? That does not sound like a allergic reaction. That sounds like a 'herx'. Allergic reactions are when your face blows up and you can't breathe. What do they call it - anaphalatic shock? (spelling). A herx means it was working. But if you're getting big herxes in the beginning, I can see with a husband out of town it would be hard to pursue that treatment. Unless you really lowered the dosage until you could handle it.
Pip
I was getting the impression there was more to that Rituxan story thanOMG - my friend said the same thing yesterday! I thought she was kidding but I don't think she was.
Wouldn't that be evil? I mean to pretend to be one of us to push your companies drugs.
I guess it would be evil of me to wish this disease on somebody like that, huh.
Pip
Well, it would be a super cheap way to market to your target audience. If IBut it's not moral.
Pip
I don't even want to be involved in this but, I read the Arthritis Foundation Board also. There seems to be a lot of history between these two people. Lynn says she updated the post twice and I have no reason not to believe her. I find it a little odd that you seem so interested in her. To each their own.Pip: I agree it is not moral!
Clarky/Sarah: I recognize you from the other boards. I noticed you posted for the first time on the misfit board right after my post the other day. See, there is no special interest in Lynn, I just have a good memory. I am happy you are having success with your treatment.
Gimpy: Do you remember the original post, too? LOL. I sometimes wonder about "plants," too.
We all just want honesty on these boards, as we are here to support one another and share our experiences. Wouldn't that be awful if people were sharing experiences that weren't true? I think it is good that we all be a little skeptical when someone is posting two different stories on different boards.
Take care all, Karin
Here is the problem with that kind of reasoning. Who is to say that anyone who posts on these boards is who they say they are. How do I know you really have RA? I have corresponded with Lynn because we were born in the same town in Michigan. I find her to be a pleasant, friendly person. I have no reason to doubt her word and I haven't seen anything that proves what she said wasn't true. I don't think you are being honest about your interest in Lynn either. I've read the posts on the other forum. There is anomosity on both sides. From what I read, you are also having success with your treatment. I'm happy for you also. Perhaps someday I'll decide to post on the foundation board, until then I wish you continued good luck with your treatment. I don't understand the comment about Rheumamisfits, but I'll assume it was just part of the conversation.Sarah: Well, you are right about these boards. It is hard to say whether anyone is who they say they are. As for whether I have RA, I can fax you my labs if you like, my name is right on top of them. I really have nothing to hide. If you would like to e-mail me privately on this board, I would be glad to prove myself to you. Re the comment on Misfits: I was just pointing out that I remember a post you made on the misfit board-- I just remember strange little details like that. That's all!
Take care, Karin
Out of respect for Shandi I have posted a new topic titled Who are We? I'm hoping we can move the recent discussions out of this post so that what we read here is the subject it was intended for.
Peace & Love...Neasy
Oh for God's sake Karin....do you have to start something on every arthitis board?I have to agree that the morality of drug companies makes me sick.
I can think of only one good thing that comes from drug companies. Free samples. In the end they probably aren't free as we somehow will pay for their "generosity" with a hike in some other medication price. Like my last doc visit I walked away with a maintenance inhaler (I have to mail order that one so my doc gave me one), a different easy to use inhaler for one of my maintenance asthma drugs, a free fill of my rescue inhaler PLUS up to off on my next 3 fills of it.
My rheumatologist gave me enough samples of the provigil (the no fatigue med) to last a month and gave Danielle enough Celebrex to last a month. Both of these medications are a piece thru my insurance.
Both doctors are aware of our financial situation with it being only my husband working. While he makes decent money and I have been able to space out refills over the month, it is still a lot of money we spend at the pharmacy and every little free sample or coupon helps.
Please note, this is the only good thing I see with the drug comapnies lol.
Once again, I want it noted that I had nothing to do with this
Phats Noted: ? Pip Pip, It's an inside joke....generally, I'm the sh*tstirrer on this board. But, I have changed my evil ways, well MOST of them.
Phats Hey Phats,
I think that instead of fighting on every board they can find each other on that lynn and karin just need to get off somewhere by themselves and duke it out with each other and leave the rest of us alone. I don't even know who the h*ll lynn and Karin are. I just like to take the opportunity when it presents itself to point out that I'm not the stirrer this time
Phats
Glad I'm not missing too much here. [QUOTE=marti]Oh for God's sake Karin....do you have to start something on every arthitis board? Interesting that you just registered to post this, your first and only post. If you have something to say to me, why don't you have some courage and post it under your REAL name? Please do not be a coward. I just wanted to point out that the definition of an internet troll is someone who hides behind a fake name and posts mean things. You, my dear, are an internet troll. Love, gentle hugs, and pain free days to the entire board! Peace, Karin LOL Pip Shandi, AP therapy is not just for early patients. Go to roadback.org, and you'll see lots of stories of people who were severely crippled getting their life back. I have been on Minocin for 6 months, and it got me off of the steroids. But, a knee replacement has plunged me into a horrific flare up. If you decide on the Minocin, do not get the generic. You need to get the brand name, the pelletized version. Since the price is unbelieveable here in the U.S. I get mine from a Canadian Pharmacy, in a sealed container. Much cheaper. Hey Phats,
I think that instead of fighting on every board they can find each other on that lynn and karin just need to get off somewhere by themselves and duke it out with each other and leave the rest of us alone. [/QUOTE] Ok, I just got a VERY good mental picture of 2 women with RA slugging it out.
One had a cane and the other had on a pair of boxing gloves. and the one with the cane was beating the other in the booty and then somehow they ended up on the ground rolling around and hitting each other and about 3 mins later they were sitting on the ground exhuasted and bleeding and then they realized they could not get off the ground.
Yeah... My monies on Karin - she's on AP. Pip :-)
Sarah
Who cares who posted things on the exact date....is that all you have to do, besides having personal vendettas on people...you have young children!...can't you just let things go, and not be obsessed?
[/QUOTE]
how she's doing on AP.
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